Any help please? Dad diagnosed with Macular Degeneration - dry

[mechanicalpencil]

Hello,

A few years ago, my Dad was told he had the beginnings of Macular Degeneration and was given a leaflet at Boots Opticians. He didn't seem to be worried, neither was the Optician. I researched about it at the time and was quite alarmed. I got him some Lutein and Xeazanthin supplements.

He had another appointment today and was told that yes he has Macular Degeneration - the dry type. He was given a grid to look at and then sent on his way.

I am just worried for him. He lives on his own and is recovering from cancer. He has complained of his eyesight being worse lately.

I am surprised though he wasn't referred to an eye consultant? From what I've read, early intervention is crucial.

Any advice or tips for this disease? Should I push for a referral or is it not necessary?

Any advice or suggestions would be very welcome as I am very worried.

Thank you.

Unfortunately there is no effective treatment for dry macular degeneration. Are you sure he is not being referred for monitoring though?

@LIZS I see, yes that is what I have read 😟
No, he wasn't referred. He was given a new prescription for stronger reading glasses and told to accept a delay when going from a bright space to a darker one and to monitor himself by using the grid on a regular basis.

He was told to book another appointment one year later.

His gp can refer. If needs be ss can do a home assessment and suggest gadgets to help. DM lived with it for several years before being officially Severely Visually Impaired which gained her a blue badge, reduced tv licence, vat free gadgets and Attendance Allowance. She also got a befriender via the Guide Dogs Association although I think that scheme ended and a phone contact through the Macular Society. Some areas have local support charities offering gadgets and support.

That's useful to know about the GP , thanks.
If he is referred, what can he expect? if there's no current treatment?

I was reading about injections into the eye - but that seems to be for the wet version.

They would just check it from time to time. Hope he is not driving. Yes wet version is treatable (dm had it too initially) but not dry.

My aunt had this. We looked after her for the last 5 years of her life as she was also in a wheelchair. The most helpful thing I found for her was a 'serious readers' lamp. Not just any old reading lamp. It was something to do with the wavelength. Since she died I use it. They are bright but not blinding. John Lewis sells them. Only s SR lamp was good enough 'focus' for her. They are not cheap. But worth every penny. I don't work for them!

Thank you.
I will see what else I can find out and how best I can support him.

Look for the Macular Society which can give advice.

Hi, there is no treatment for the dry form so we don't actually refer on to anyone, it's just monitored in community practice. The grid can help detect if it's become the wet form, if your father has any sudden decrease in vision or if he notices the lines on the grid become wavy/distorted then it could suggest it's progressed into the wet form. The wet form does have treatment so in that case we would refer on a 2 week pathway to the local eye department.
The supplements you've brought him are helpful, also increasing dark green leafy veg such as spinach and kale in his diet, wearing sunglasses outside in the summer especially have been shown to help slow down progression to the wet form. Hope that helps!

@cashmerecow
very helpful! Thank you.

Eye specialist here.
Sadly as others say there's no treatment .
However depending on where you live he could be referred to a few people who can provide practical help .lamps..magnifiers .
Expert help in learning techniques to use peripheral vision
Also emotional support .
There may be an ECLO worker at your local hospital would be a good starting point

@bradypuss

thank you for the suggestions!
Can I ask what the rate of progression is like?

Rates of progression vary from person to person and can be quite slow. Join the Macular Society, which is a brilliant source of support and is active about supporting and communicating re: emergent treatments (there has been some promising research/developments for geographic atrophy - a form of dry MD - recently, e.g.).

Use the Amsler grid to monitor other (wet) changes - go to eye casualty if the grid appears to have wavy or blinking lines, new blobs or blanks etc. Be aware of other changes requiring urgent intervention, such as a sudden onset of new floaters, flashing lights or curtain/veil effect in vision (signs of retinal detachment).

Invest in good lighting - it makes a huge difference. Magnifiers are also helpful and iPhone has a magnification app. All devices have good display accessibility features too - contrast, brightness etc.

And try not to worry too much, although I know how difficult that is. Change is usually gradual and he will adapt.

@bradypuss
thank you! I will let him know these tips !

Just something to keep in mind: if his condition ever progresses or if new treatments are suggested in the future, especially anything like injections or infusions, it’s worth reading up on potential side effects. One treatment used for thyroid-related eye conditions, Tepezza, has actually come under scrutiny, there are ongoing Tepezza lawsuits related to hearing loss and other unexpected issues.

I know that’s a different condition, but it’s a reminder to stay cautious and informed about new meds. You're clearly doing right by him already. Wishing you both the best.

Thank you for that @lemontart13 , that is definitely worth bearing in mind.